Changing minds about dementia…

The late Richard Taylor PhD continues to inspire and motivate many people with and without dementia around the world, and will always be for me, the person ‘who saved my life’. Meaning, the person who showed by example, it was possible to live with dementia, and I did not just have to go home and die from it via aged care. He lived with dementia a long time, and died from cancer, not dementia, which due to many of us being diagnosed so much earlier in the disease process, is likely to become the norm.

Many of the types of dementia that people are diagnosed with, if diagnosed early, mean people can and do live well for much longer, and will often die from something unrelated to dementia such as cancer.

I feel sure “What we can’t do alone, we can to together” and have a sincere belief that people with dementia will be the ones who change the world for themselves, and those being diagnosed in the future. We are the ones who have chosen or been forced to think outside of the box in order to improve our care! Personally, I will continue to advocate for and work to empower others diagnosed with it, to find their own ways to live with dementia, and to demand disability support and care that includes rehabilitation, and not just go home and die from it.

We must all learn to see the symptoms of dementia as disabilities to be managed and supported, rather than a pathway to lost capacity and death.

Below are the two excerpts I found by and about Richard, that I still feel ‘saved my life.’

Finding the right words: After a lifetime serving people with mental illnesses, writing helps this psychologist and Alzheimer’s patient make sense of his own mind. By Amy Novotney, Monitor staff, Print version: page 24

“For more than 40 years, Houston clinical psychologist Richard Taylor, PhD, helped troubled teenagers gain control over drug and alcohol addictions and curb suicidal thoughts. Today, he serves a new troubled client: himself.

In 2002, neurologists diagnosed Taylor, then 58, with ‘dementia, probably of the Alzheimer’s type,’ and for about three weeks, the psychologist cried every day, he says. But rather than join the nearly 40 percent of people with Alzheimer’s disease who become clinically depressed, Taylor began writing about his fears-and triumphs-as a way to ‘gain control over what was happening between my ears,’ he says.

‘Writing became my therapy without a co-pay,’ Taylor recalls in one of 82 essays he wrote for his book ‘Alzheimer’s From the Inside Out’ (Health Professions Press, 2007). ‘I wrote to reassure myself that some of the old me was still there, because I was in transition in ways no one seemed to understand.’

His narratives address common questions such as ‘What is it like to have Alzheimer’s disease?’ (Answer: like he’s looking at the world through his grandmother’s lace curtains) and his fears and concerns for an uncertain future. And while a piece that would have taken him 10 minutes to write pre-dementia often takes him 10 hours these days, the work helps Taylor better understand himself.

But it wasn’t until he shared one of his essays with a friend-also diagnosed with early Alzheimer’s-that Taylor realized that others with the disease shared his concerns, and he decided to take his essays mainstream. Since the book’s publication, Taylor has learned that he isn’t the only person with Alzheimer’s disease to conclude, after one too many failed attempts at buttoning his shirt correctly, that the shirt was ‘broken,’ as described by his granddaughter in one essay. Nor is he the first to find that his mind has been full of “puddles” since the “tsunami of forgetfulness” cascaded through his brain. But Taylor might be the first to say it so eloquently.

He’s now a public advocate for the more than 5 million Americans diagnosed with Alzheimer’s disease. He speaks nationally on behalf of patient involvement in treatment decisions and edits a quarterly newsletter for people with early Alzheimer’s and their caregivers.

Having sat on the clinician’s side of the couch himself, Taylor doesn’t hold back in his plea for help from his former profession. He says he’d like to see psychologists get more involved in counseling and treating people with Alzheimer’s, especially in the disease’s early stages, and move away from viewing advanced patients as half empty.

‘We’re always a whole person in our own minds,’ Taylor says. ‘Psychologists should be supportive of people’s wholeness-their all-rightness.’“

“I am scared I am running out of usable time. Usable in the sense that I am using it now. I know I am not at the same level of general competency this January as I was last January. I am more dependent on others for assistance in performing the daily activities of living my current life. Clearly I could not keep this pace of activities without my spouse cleaning up behind me, reminding me to do this or that, asking if I wanted to do this or that. Taking care of me when I can’t, and helping me to take care of myself when I need help. Her patience is both generous and essential.

I have good days and bad. Good hours and bad. Good moments and bad. There is no predicting when or how the bad ones will come, except when I am very tired.

Sometimes I am aware I am floundering and cannot seem to hold myself together. It is strange watching yourself misdial a phone number, time after time after time. Look for a name and then forget what I was looking for right in the middle of my search. Stand up from my chair to do something and not have a clue as to what it was. Most dangerous for me are the moments I do not understand, but think I do, or do not remember. I say things, I tell people things, I think I understand situations that are not true, a little true, or from out in left field, and the worst part of it is I do not know when each of these moments are happening. Will I do something on this date? Sure. Except I wrote it on the wrong month in my calendar and did not find out for three weeks. Can I do this? Of course! When I really did not understand what was being asked of me, and I just said “yes” for reasons that only Dr. Alzheimer knows.

Tie these all together; multiply them by 25 and you have an insight into my days. There is of course lots of time between the events, when I cruise along acting, and sometimes thinking like there is nothing wrong, until SPLASH-another glass of ice water in my face, compliments of Dr. Alzheimer.”

Many members of Dementia Alliance International and many others living with dementia I have met in person or online regularly over the past few years are forced to prove they have dementia, and Richard Taylor carried with him, in his wallet, a letter from his own medical specialist who diagnosed him with ‘dementia, probably of the Alzheimer’s type.’ Even though he was regularly accused of falsifying this letter, he regularly produced it, and chose to ignore the offensive and insensitive doubters. When presenting publicly Christine Bryden often puts up a slide with images of her brain scans, calling them her credibility slide, and has been accused of stealing them. A new DAI board member, Brian Le Blanc recently sent me a letter from his specialist, to ‘prove, he has dementia. It happens too often, to too many of us for all of our doctors to be wrong, or for all of us to be liars…

Thank you Richard Taylor for being the first person to change my mind about dementia.

As the research and clinical dementia community forges ahead with diagnosing people with dementia in a more timely fashion, meaning, much earlier in the disease process, hopefully we will all get used to people with dementia functioning at much higher levels, for far longer than was once the case.

17 thoughts on “Changing minds about dementia…”

Thank you for this article. I have recently been diagnosed with MCI. I watched my Mum progress through dementia so I decided I would not go through a raft of tests when I already know what I have. I am determined that I am taking a proactive approach to this disease so I am currently researching and learning and putting in place strategies for the future. It is good to feel like I am managing it, at this point anyway:) It is so good to read of others who have taken a positive and proactive stance.

Hopefully, when people better understand the disease and the people who live with it, some of these misperceptions will be eliminated, and others reduced. I suspect it will be a long battle because it’s hard to change minds, particularly when the beliefs they hold are so deeply entrenched. However, we must continue to #FightTheGoodFight

I feel honored to have known Richard and call him friend! I miss him. Thank you Kate for sharing those memories here. Richard touched many people’s lives around the world and You have most admirably taken on the work of giving others around the world HOPE!
Thanks for all you do!

Thank you Judy… I too felt honoured to have met him in person, and to have called him a friend. He blessed many lives, and my memories of our conversations and his special ways of ‘speaking his truth’ always gives me HOPE and motivation to keep going. Thanks for all you do as well. 🙂